In 2002 the MS Society asked people affected by MS what information they needed. The responses to this survey led to the development of the award-winning MS Essentials series of publications. Now we need your help again.

As that series nears completion we are again seeking your views on:

- the kinds of information you need now,
- where you get it,
- how accessible it is,
- how you request it,
- what formats you prefer it in,
- how the MS Society can improve its range of information.

From 2 January – 14 February 2008, all requesters of publications will receive a paper survey which can be returned to a freepost address. The same survey is also available for anyone interested via the link below.

Take part in the survey

http://www.mssociety.org.uk

MS Society Scotland chairwoman and UK trustee Denise Fagg and Sunderland branch chairman Alan Lindsley were made Members of the British Empire (MBE) in this year’s Queen’s New Year’s Honours list.

Denise was named in the list for her work in the voluntary and carers’ services, while Alan was made an MBE for his services to the branch.

Simon Gillespie, chief executive of the MS Society, said he congratulated both recipients on the “well deserved recognition of their hard work and dedication”.

Alan is now in his 25th year as branch chairman and said he was proud to have received the award.

He added: “The news came completely out of the blue after I came out of hospital following an operation for a new knee. I was certainly surprised.

“It’s absolutely brilliant and is not just about what I’ve done, but the work of all the volunteers who’ve helped the branch over the years.”

Denise, who retired as chief executive of the Perth and Kinross Association of Voluntary Services in 2001 after 10 years, has campaigned for recognition for all carers, concentrating on young carers issues.

She said she was delighted to be made MBE.

MS Society

New research announced this week has found an association between certain genes and the severity of multiple sclerosis (MS).

The results of the study by Prof George Ebers, chair of Clinical Neurology at the Wellcome Trust Centre for Human Genetics , will be published in the journal Proceedings of the National Academy of Sciences and represent a step forward in the understanding of the role of genetics in MS.

The study involved comparing genes from people with severe MS who used wheelchairs within five years of being diagnosed and people who had no disability 20 years after diagnosis.

It revealed that a particular version of a gene called HLA-DRB1*01 was rare in people with severe MS and suggests it plays a protective role against the more severe progressive course that some can experience with MS.

Dr Laura Bell, research communications officer for the MS Society, said: “This interesting new study shows that particular genetic factors work to modify the progression of MS and provides insight into the processes which occur in MS development, however it is worth noting that MS is not directly inherited and there is no single gene that causes or prevents it. Environmental factors also play an important role in people’s susceptibility to developing MS.”

Professor Ebers will be speaking about his research at the MS Society’s MS Life convention in Manchester on 29 and 30 March, 2008. MS Life is aimed at everyone effected by MS and will include research talks from eminent scientist from across the world.

http://www.mssociety.org.uk

New research funded by the MS Society has shown that Botox injections to the bladder provide benefits for people with multiple sclerosis (MS) with sustained improvements to their overall quality of life.

Bladder problems are a common and disabling symptom of MS where both storage and emptying processes can be disrupted. Incontinence is common and being unable to ‘hold on’ (known as urgency) is understandably considered by many people with MS to be one of the most troubling symptoms they face.

In the recent research, carried out at the National Hospital for Neurology and Neurosurgery, 43 people with MS who had severe incontinence problems were treated with botulinum neurotoxin type A (Botox) bladder muscle injections. The action of the injection on the bladder is complex but its overall effect is to reduce involuntary contractions and so reduce frequency of urination and urgency.

The £200,000 study showed significant improvements in incontinence episodes and the frequency of urination both day and night. There were also sustained improvements in all quality of life measures used and frequency of urination returned to near normal.

Dr Laura Bell, Research Communications Officer for the MS Society, said: “Living with symptoms such as bladder problems can be extremely distressing and restrictive, but this type of treatment can make a tangible and substantial improvement to people’s lives and we hope it will become part of standard care for people with MS who need it.”

The typical duration of the effect of the treatment was 10 months and similar results were seen with repeat treatments.

This treatment is not yet licensed in the UK and is consequently not yet widely available for people with MS.

Professor Clare Fowler, Consultant in Uro-Neurology at The National Hospital for Neurology and Neurosurgery said: “This study was done as part of a research investigation and the treatment is not widely available. This is because bladder injections of Botox have not yet been licensed and although studies by the pharmaceutical company are ongoing it will probably take a few more years.

“This research has been extremely valuable in establishing a clinical method, researching why the treatment works so very well, and providing an opportunity to demonstrate the minimally invasive injection technique to more than 60 visitors, mostly UK consultant urologists, who attended as observers.”

The MS Society has given its full support to a unique campaign launched by Leonard Cheshire Disability, which aims to challenge and change people’s attitudes toward disability.

The disability charity has teamed up with Aardman Animations to create Creature Discomforts, based on the much-loved Creature Comforts series but featuring the hallmark Plasticine characters voiced by people with disabilities including multiple sclerosis (MS).

The characters include wheelchair-user Peg the Hedgehog, Spud the Slug in his mobility scooter and Tim the Tortoise on crutches and carry the voices and experiences of real people living with MS.

Matthew Trainer, Head of Communications at the MS Society, said: “Creature Discomforts will raise issues faced by people living with disabilities in a way that has not been done before. We hope this will challenge the discrimination and ignorance that people with MS face.”

The animations use the genuine voices of a number of disabled people describing in their own words the negative attitudes and barriers they experience, which separate them from society.

One of the four animations addresses a common assumption that people in wheelchairs are not able to speak for themselves.

The animation opens with Spud the Slug, who is in an electric wheelchair. The character is voiced by John Marrows of Chesterfield who was diagnosed with MS in 1986. In the advert he can be heard saying that “…many people say – oh you’re in a wheelchair – you can’t do anything. A lot of it is ignorance.”

Peg the Hedgehog, voiced by Sheila Morgan who also has MS, appears next in the clips, sitting in her wheelchair having a cup of tea. She says: “People have assumed that wheels mean… nothing up here in the brain, you know.” The Creature Discomforts characters will appear in adverts online, in magazines, at bus stops and on the London Underground. In January, the animations will be aired on ITV.

Bryan Dutton, Director General, Leonard Cheshire Disability said: “We want people to change the way they see disability, to think and act differently and to make a positive difference to the lives of disabled people and we are delighted that the MS Society supports our campaign.

“Disabled people experience unnecessary social barriers which are created largely through ignorance. In the twenty-first century it is unacceptable that such negative attitudes to disability still persist. Everyone has a part to play in creating a world in which disabled people are included in every aspect of life.”

See more of the campaign and the characters themselves at http://www.CreatureDiscomforts.org.

Birmingham resident Pat McDonald, the past President of the National MS Society, Michigan Chapter, has been recognized for her 28 years of service and personal contributions in the fight to end the devastating effects of multiple sclerosis (MS). This newly created award, entitled the Patricia A. McDonald Legacy Award, will be held in her name and presented to others who follow in her footsteps through lifelong efforts on behalf of people with MS.

McDonald, who still contributes her time and expertise as a volunteer for the Society, is greatly respected and admired.

The award was presented at the National MS Society’s 2007 Annual Meeting and Volunteer Recognition Luncheon held at the Troy Hilton Hotel.

Also recognized was Birmingham resident Susan Rokosz, Ford Motor Engineer, and major player in development of the da Vinci Awards fundraiser benefiting the National MS Society. Now in its eighth year, the da Vinci Awards salute an approach to the design of products, services and environments to be usable by as many people as possible regardless of age, ability or circumstance.

“We congratulate these women for their accomplishments and vigorous efforts on behalf of the National Multiple Sclerosis Society,” remarked Elana Sullivan, the new president of the National MS Society, Michigan Chapter.

For every dollar donated to the local National MS Society Chapter, 87% goes to research, programs and services for more than 18,000 people living with MS in Michigan.

MS stops people from moving. The National MS Society exists to make sure it doesn’t. We help each person address the challenges of living with MS through our 50 state network of chapters. We fund more MS research, provide more services to people with MS, offer more professional education and further more advocacy than any other MS organization in the world. The Society is dedicated to achieving a world free of MS. We are people who want to do something about MS now. Join the movement at http://www.nationalmssociety.org.

New research published in The Journal of Experimental Medicine has provided more evidence that a common human virus called Epstein Barr Virus (EBV) plays an important role in the development of MS.

EBV, the virus which causes glandular fever, has been linked to MS for over 30 years. Several studies appear to have shown that people with MS have been exposed to EBV and that EBV is active in their bodies during MS attacks.

In MS, lesions (or plaques) are patches in the central nervous system where inflammation has resulted in the loss of myelin, the protective sheath which surrounds nerve fibres. This study on 22 people with MS demonstrated that EBV is present in the lesions that attack myelin in almost all of the cases examined (21 out of 22).

The researchers propose that EBV is carried across the blood-brain barrier by a certain type of immune cell called B cells, the cells of the immune system that make anti-bodies. EBV infected B cells which accumulated in lesions were shown to be a common feature of MS, and the number of EBV infected cells correlated with the degree of brain inflammation.

The absence of EBV infected B cells in other inflammatory neurological conditions indicates that this may be specific to MS and not a general phenomenon driven by inflammation.

It is worth noting that EBV is one of the most common viruses in the environment, with up to 90 per cent of the population thought to have been infected by it at some time, most of whom do not go on to develop MS.

There is not yet enough data to prove that EBV infection causes MS. There needs to be further research to explain the link between EBV infection and MS.